Examination of Witnesses (Questions 320
- 339)
WEDNESDAY 26 MAY 2004
MISS MELANIE
JOHNSON MP AND
DR STEPHEN
LADYMAN MP
Q320 Jim Dowd: Perhaps one last attempt
at this point that Keith has raised. I am getting the impression
that you want to say, "No, we're not going to provide any
more hospices or provide the mechanisms to provide them".
You are shaking your head. Right, that is progress. I accept what
you say about domiciliary care and providing more support and
at-home services, but is it your view that a hospice, as an institution,
as a building and as an establishment, has no value to add to
the service?
Miss Johnson: No, not at all.
I know my local hospice in my own constituency very well. Not
at all do I think that they do not add value. They add huge value
in all sorts of ways. It is not only in the bed spaces and what
is provided by way of actual in-patient care, but also that the
day care and the other work that can go on out of a hospice base
are clearly very valuable. They are clearly providing a very good
service from the many hospices around the country.
Q321 Jim Dowd: So it could be, if
the circumstances were judged to be appropriate, that the Government
would encourage the development of a hospice/hospices in areas
deficient in that service but where it would add materially to
the value of the service provided in terms of those towards the
end of their life?
Miss Johnson: Yes, but the decision
needs to be with local commissioners primarily, about what configuration
of service they want, given the historical position that they
are in, what their needs are, and how they are best to meet those.
That might include a hospice; it might not include a hospice,
or an extra hospice. Providing the outcomes are good and equitable
for patients, then our objective is to focus on the outcomes.
It is not to focus necessarily on a single model of delivery,
but to accept that we already have a diverse pattern of provision
in palliative care, and that that diversity and richness is likely
to continue—the exact configurations varying from area to
area.
Q322 Mr Jones: Perhaps I may now
turn to children's palliative care. In the memorandum, the Department
of Health states that, because the children's services evolved
in different ways, "the underlying conclusion is that it
would be unhelpful to set out a singular care pathway". Is
it still anticipated that NICE will be issuing guidance on child
and adolescent cancer services in February next year? If so, is
it likely that this will reflect a range of different models of
care?
Dr Ladyman: I cannot speak for
what NICE are going to produce, of course, but, yes, they are
going to produce in February. If I can combine a general answer
to that question with one to the previous question, here is how
I would expect it to work for children. I would expect primary
care trusts to sit down with the guidance that is provided for
them. For example, the National Council for Hospices has produced
guidance on how to assess palliative care in the local area. I
would expect them to look at that. I would expect them to look
at the National Service Framework chapter on palliative care.
I would expect them to look at the NICE guidance. Having looked
at these frameworks, I would expect them to come up with a plan
that meets their local requirements for providing the full range
of palliative care: whether that is at home; whether that is for
respite; however it has to be managed. I would expect them to
come up with essentially an ideal strategy for how they are going
to meet the needs of their local population. That strategy may
be that they can identify the need for a certain amount of domiciliary
care and a certain amount of hospice care. They will then look
at where that hospice care might come from, who they can commission
it from, and how close the local hospices are. It may be that
they can meet all their needs and produce a strategy which meets
all these guidelines, using existing resources and existing hospices—in
which case, no problem. That is what they would expect to start
to implement. On the other hand, they might identify a deficiency.
This PCT that you are talking about, where the nearest hospice
is 100 miles away—if they feel that is not appropriate for
children in their area, they will have to start asking themselves
the question, "How do we then commission that particular
type of care pathway for those children who need that sort of
care?". Then, if a hospice has to be developed in their local
area to meet that need, they will have to ask themselves how they
will go about making sure that hospice is developed, which partners
they will put into the package, how they will fund the development
of that particular service, and who they will commission it from.
They will look at the voluntary sector; they will look at the
state sector; and they will work out a strategy for making sure
that all the pieces of the jigsaw are in place. The next question
you are going to ask me is, does that mean the Government are
going to encourage the development of hospices—
Q323 Mr Jones: No, I am not going
to ask you that question.
Dr Ladyman: . . . and are we going
to have a pot of money somewhere? No, they have got the money
and—
Q324 Mr Jones: Dr Ladyman, I am not
going to ask you that question. I have worked out that I am not
going to get an answer, so I will move on to a different one.
Dr Ladyman: I was going to give
you an answer—but if you do not want it . . . !
Q325 Mr Jones: The question I was
asking earlier was to do with the pathway of care, particularly
with children and their becoming adolescents. They utilise different
sorts of services. Would you examine whether the regulations that
govern the operation of services might be better based on the
pathway rather than on the service provider?
Dr Ladyman: The National Service
Framework for Children is very largely based on pathways. The
research that has been done in developing the National Service
Framework has looked intensively at the different types of care
pathway that children in different circumstances have to move
through. Whether we are talking about the bit that is going to
deal with children with long-term conditions and autism, or whether
we are talking about children who have palliative care needs,
we have been looking at how those needs develop and the sort of
life pathway that they have to go through—and the different
needs they have at different stages of that pathway. The needs
of the toddler with a life-limiting illness are very different
from the needs of an adolescent, for example, and the transitions
between the different stages will be vitally important. They will
have different needs at different stages. The family will have
different needs at different stages. The carers will have different
needs at different stages. And that is very much the way the National
Service Framework is being developed.
Q326 John Austin: You talked about
the kind of care that children with life-limiting and life-threatening
illnesses need. In your evidence to us you have said that generally
this care is provided by the paediatric community nursing teams.
Some time ago, a previous Committee looked at the health needs
of children and found very big gaps in the provision of children's
community nursing services. I think that when we had the RCN in
recently they were saying that the position was patchy. You have
said in your evidence to us that something like 70% of the country
has access to a children's community nurse. That is different
from saying access to a generic paediatric nursing service, is
it not? To what extent do you think that there is a comprehensive
provision of community paediatric nursing services in this country,
particularly for children with life-threatening illnesses?
Dr Ladyman: We can write to you
with more statistics if you want, but I think that probably the
Committee would be best informed by waiting a short period of
time for the Chief Nursing Officer's review of community nursing,
which deals very comprehensively with these matters. It is almost
nearing completion and we should be able to publish it in the
not-too-far-distant future. It deals in very great depth with
the role of community nursing, the role of school nursing, and
the role of nursing generally in the life of children. You will
see there that we are pulling together, under the Chief Nursing
Officer's guidance, a strategy for dealing very much with the
issues of equity that you have identified.
Q327 John Austin: So that notwithstanding
the local decision-making and local priorities, you would believe,
from the Department's point of view, that every area should have
a comprehensive generic community children's nursing service?
Dr Ladyman: And what the Chief
Nursing Officer's review does—I hope I am not giving away
her secrets here and that she will forgive me—is to set
a series of guidance for primary care trusts who are developing
these services to follow. Again, it is another framework which
they will be operating within, which will deal with the very issue
that you raise.
Q328 John Austin: Many of these children
have specialised healthcare needs. One of the issues which we
raised recently when we had Mr Hutton before us were the general
gaps in the commissioning of specialised healthcare services.
Do you think that particularly affects children and those conditions
which children may be prone to?
Dr Ladyman: It would be crass
of me to say that we are equally good at commissioning specialised
services everywhere, because clearly we are not. The primary care
trusts are only a few years old, and local commissioning is something
that has been developing and which people are getting better at
all the time. They are also coming to terms with the different
complexities that they have to address when commissioning services.
It would be ridiculous of me to say that the commissioning of
specialised services is equally good everywhere: it clearly is
not. However, things are changing. First of all, the PCTs are
getting better at it. Secondly, we are providing more guidance,
in terms of the National Service Framework for Children—which
you can see in those reports coming out, the NICE guidance, et
cetera—within which they can work. So I think that these
things are coming together; that it is getting better everywhere
and it is becoming more equitable everywhere. Our motto in the
Department at the moment is "Progress, not perfection".
We are not claiming perfection, but we do think that progress
is being made.
Q329 John Austin: Is there a specific
role in this regard, in terms of commissioning of specialist services
for children, for the Strategic Health Authority? Are they fulfilling
that role?
Dr Ladyman: Of course there is
a role, because these services, especially for children, have
to be commissioned over quite considerable distances. One hospice
will serve many PCTs. So clearly there has to be a role for Strategic
Health Authorities in making sure that PCTs come together and
are co-ordinating their commissioning services. How each Strategic
Health Authority and their local PCTs will do that will be a matter
for them.
Q330 John Austin: Are you satisfied
that it is happening?
Dr Ladyman: I am satisfied that
it has started to happen. I am not satisfied that it has yet reached
where I would like it to be.
Q331 Dr Naysmith: One of the other
areas—and you have already made reference to this—of
the inequities that exist in this area is the historical relationship
of palliative care to cancer. It is a group of diseases which
is responsible for the death of no more than 25% of the population,
and yet something like 95% of the hospice places are dedicated
to all cancer sufferers. So that is obviously an inequity. However,
it is worse than that. NICE guidance, when outlining best practice,
has used cancer as an exemplar, and yet they are setting out guidelines
for all diseases. The mapping of palliative care services is being
done through cancer networks and, until recently, palliative care
was indexed on the Department of Health website as a subsection
under "cancer". Is it not true that existing services
deal well with diseases with a relatively predictable trajectory,
like cancer, and badly with almost every other disease?
Miss Johnson: First of all, we
recognise that 95% of all referrals are actually for cancer patients,
and we think that is an issue for specialist palliative care teams.
Secondly, we are making sure that all the National Service Frameworks,
and indeed all the National Service Frameworks that are out, do
have specific modules that actually relate to palliative care.
While I accept your comment about where it was on our website,
therefore, I think it is true to say that we are recognising that
palliative care is wider and it needs to be related to all sections
of the population, not simply to those with cancer; and particularly
to patients with chronic diseases, where there are a lot of issues
and where we need to recognise that there are a number of actions
we can take. An extension of palliative care is one of the options.
However, there are other options—like the work that is going
on on the Expert Patients Programme, which has been highly praised
by those who have been involved in it—supporting patients
to self-manage their conditions, and things like disease management
with specialist nurses and a wider range of multi-professional,
multi-disciplinary teams, supporting people. What we are doing
is developing case management and support for people who have
chronic diseases. Obviously, part of that needs to be the palliative
care aspect for some of those diseases and conditions, where that
is also relevant.
Q332 Dr Naysmith: Do you think that
you will be able to alter the case mix and bring in conditions
such as heart disease, kidney failure, chronic obstructive airways
disease—all of which can require palliative services and
possibly hospice services?
Miss Johnson: Yes, indeed.
Q333 Dr Naysmith: Most people do
not think that there is a lot of evidence that that is going to
happen.
Miss Johnson: For example, we
are currently working up Part 2 of the National Service Framework
on renal care and we have had quite extensive discussions and
consultations on end-of-life care with various stakeholders, including
Mike Richards, who is here again today, and Ian Philp, National
Director for Older People. If people decide that they are not
receiving ongoing care, the issue of palliative care for renal
patients is an important issue. We want to make sure that they
can deal with that, that they will be comfortable, and that they
are supported in their decision and in the quality of their end
of life.
Q334 Dr Naysmith: I accept clearly
that there are other ways and sometimes better ways of dealing
with chronic conditions, and putting resources into that might
be a better way of dealing with this because, for a number of
these diseases, as you have just said, there will be end-of-life
issues. One of the reasons it has been suggested to us that this
inequity may arise is because of the way hospice services are
funded, in that we use care episodes as a basis for funding these
services. Of course, that would tend to give a bias against situations
where people need care for longer rather than for relatively short
periods of care. Do you think that that is a contributory factor?
If it is, do you think that we can do something about it? What
would you suggest that we could do about it?
Miss Johnson: One of the first
things to say is that I think there are some positives coming
out of the fact that it has historically been linked up with cancer,
because cancer has increasingly focused on the needs of patients
and their families, and the provision for cancer patients in many
areas is excellent now—on the basis that often a lot of
work has been done, not only by the Government and staff but also
by the patients' groups in those areas in focusing the service.
Out of that on the palliative care side, therefore, has come a
much stronger focus on a lot of good practice—things like
the Gold Standards Framework, the Liverpool Care Pathway, and
other areas—where that practice will transfer across and
will, as it were, seed the development of a lot of non-cancer
palliative care. So I think that there are some positives out
of that. In terms of payment, the funding mechanisms are in transition
and will be changed for the voluntary sector by 2008. There will
be the introduction of payment by results. That will have some
advantages here, providing we recognise that we have needs in
terms of palliative care funding that are recognised by the payment-by-results
formulas, as it were, which are still in development and—
Q335 Dr Naysmith: That formula will
have to recognise that some of these other diseases will have
much longer timescales.
Miss Johnson: Indeed, but the
advantage of it is that the money will follow the patient—which
is a big advantage in terms of making sure that the funding is
there for what people need. We are looking not only to have simple
formulas for standard arrangements, but recognising that some
specialist arrangements will need to be put in place for parts
of the service where a simple formula will not work for a particular
area, and perhaps a more complex formula—recognising shorter
and longer stays, for example—might be necessary. And obviously
this will be one of them.
Q336 Dr Naysmith: Would it be fair
to say this is an area where you feel that we need to do better,
in terms of diseases other than cancer? As you yourself said,
there are often excellent situations for cancer but—
Miss Johnson: Indeed, and that
is one of the reasons why we are focusing a lot on chronic diseases
and chronic disease management, because we think that it is one
of the big areas, one of the most important priorities for the
healthcare system in the future. Many of us will live longer;
many of us will develop some of those diseases and conditions
which are increasingly associated with people getting older: not
exclusively so, but there is a greater prevalence of them in the
population as a whole as we all live longer lives. We need to
reflect those needs and make sure that they are picked up.
Q337 Dr Naysmith: You are raising
the subject of dementia and the various ways of dealing with dementia.
There is a huge lack of really good support services for many
dementia sufferers. I do not know if you want to go into that.
Miss Johnson: I do not know whether
Stephen wants to talk about it from the older people's point of
view in particular.
Dr Ladyman: Dementia is an important
issue and long-term care for dementia sufferers is something that
we have to keep working at. It is provided in a range of settings.
It is provided in National Health Service settings; it is also
provided in private care home settings and, increasingly, I am
glad to say, in people's own homes or in extra care settings now.
So it is a big and complex subject. Maybe it is something we want
to leave for another day.
Dr Naysmith: I just wanted to point that
out as an area where I know there is lack of provision in a number
of areas.
Q338 John Austin: Clearly I welcome
the developments of the extension of palliative care to conditions
other than cancer and, as Doug Naysmith has pointed out, we have
certainly had evidence on renal failure that the provision of
palliative care does enable patients to exercise real choice about
whether they go on dialysis and whether they stay on dialysis.
They can make real choices. I recognise the need to change the
basis of funding but, if these changes are to come about, we need
to take the hospice movement and the voluntary sector palliative
care providers with us. You have mentioned significant changes
that are forthcoming in the method of payment and remuneration.
To what extent is the consultation with the voluntary sector providers
going on? What has been their reaction? I am sure you would agree
that it is important that they are carried with you, rather than
causing some conflict.
Miss Johnson: What we need to
do is to work very closely with the sector in developing the standards,
the formulae, that are going to be used, for payment. It is still
at a relatively early stage still in the discussions. The sector
as a whole is only expected to transfer across fully by 2008.
As you will appreciate, there is quite a lot of discussion to
go on but the National Partnership Group is currently considering
how best to implement a national tariff and payment by results.
Obviously, they involve the key players here and provide an opportunity
for us to have a forum in which the issues can be discussed with
those who have expertise to provide to people in deciding the
best way ahead.
Q339 Mr Burstow: In the answers you
have just given, you have indicated the direction of travel, which
is to widen the availability of palliative care to other non-cancer
groups, which is obviously a very welcome thing. Could you give
us some idea of what estimates the Department has made as to the
speed of travel in that direction, how soon we might see a shift
occurring, and what sort of estimates you have put on the cost
of expanding the services that will be necessary to carry the
weight of the additional people who would then become eligible
for access to palliative care services?
Miss Johnson: I have already indicated
in some of the workforce areas what the future figures are over
the period to 2008 and beyond to 2015. It might have been before
you were with us. In general, we do not have a figure to put in
front of you on this. I am not aware that the Department has a
figure. It would be very difficult to produce one because one
of the things we need to do is to work with the PCTs in carrying
forward the local commissioning of services which will lead to
the provision that we are looking for in the future. We know that
there are patchy provisions already. Some PCTs may be providing
things like 24 hour district nursing cover and other general practices
are not. It is not an even base from which a simple, national
calculation can easily be done.
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